When Audrey Vernick looked at her infant son Bennett’s MRI, a single, terrifying sight became clear: half of his brain was black. This devastating image was the result of a massive stroke Bennett suffered in utero. This was the beginning of a challenging journey that included a diagnosis of catastrophic epilepsy, known as Infantile Spasms.

Audrey, who is now the Director of Patient and Family Advocacy for the Pediatric Epilepsy Surgery Alliance, joins us to share her story and the critical advocacy insights she has for other families navigating pediatric seizures and drug-resistant epilepsy.

The Early Months

In the earliest months of Bennett’s life, Audrey began noticing “jerky movements”. She was initially reassured by her pediatrician that these were just Moro reflexes, or normal startle movements. But her son became progressively fussy, experiencing periods where he was inconsolable for hours, a state Audrey was told was simply colic.

Audrey explains that her experience highlights how easily subtle seizure activity can be mistaken for normal baby behaviors. When her concerns finally led to a specialist, an emergency video EEG monitoring was arranged. It was confirmed that Bennett was indeed having seizures.  An MRI soon followed, revealing the massive stroke and prompting a cascade of medical action. Audrey immediately shifted from a worried mom to an intensely focused advocate, researching relentlessly to find a path forward.

Importance of Early Detection

Based on Audrey’s experience and her work with the Infantile Spasms Action Network:

Infantile Spasms (IS) is a medical emergency. It is a catastrophic form of epilepsy that must be addressed urgently.

Audrey encourages parents to be a “bull in the China shop” and to trust your gut. If you suspect IS, take videos and logs of suspicious movements and at the ER, you can request to see a neurologist or epileptologist (an epilepsy specialist) and request video EEG monitoring. These details are powerful when advocating for your child’s care.

After two years of Bennett’s seizures persisting despite trying two front-line medications, the family knew they had reached a point of drug-resistant epilepsy (DRE).Audrey shares a crucial distinction she learned: A surgery consult is different than a surgery.

If your child has DRE, you should ask for a referral to a comprehensive epilepsy center. This pre-surgical workup is about starting a conversation, collecting more information, and opening up another toolbox of possible solutions for your child. This detailed evaluation provides access to multiple specialists. In some cases, families who choose not to proceed with surgery still see an improvement in seizure control because the evaluation helps them better understand the condition. The longer a child has uncontrolled seizures, the more devastating the consequences can be to their development.

Treatment for Infantile Spasms

Ultimately, Audrey and her husband decided to move forward with a hemispherectomy —a major surgery to stop the epilepsy by disconnecting or removing the diseased right side of the brain.

The day of the surgery, Bennett was having a cluster of seizures. The continuous seizure activity had severely suppressed his language; he only spoke in two-word phrases. Two weeks after the successful procedure, on the airplane ride home, an astounding thing happened: Bennett sang the entire Elmo song. His language “exploded”. His development took off because the debilitating seizures were no longer holding him back. For Audrey, the only regret was “not doing it sooner”.

Now 21, Bennett has undergone multiple procedures and leads a full life, balancing a part-time job and college classes. His mother’s final message to parents facing a terrifying diagnosis is powerful: You are an expert in your own child. Trust yourself and use that expertise as a tool on your journey.

Connect with Resources and Support

If your child has drug-resistant epilepsy, you are not alone. The Pediatric Epilepsy Surgery Alliance is a caregiver-led organization dedicated to empowering families.

• Website: epilepsysurgeryalliance.org
• Resources: They offer programs like the Parent Support Navigator Program (trained peer support) and a Surgical Evaluation Travel Scholarship to help families get to a level four epilepsy center.
• Infantile Spasms Action Network Website: https://infantilespasms.org/families/

Support the Host & Show

If you found value in this conversation, please check out host Katie Taylor’s work and community resources:

• Join Katie Taylor’s Substack for in-depth insights and articles: Join here

• Get the SupportSpot App—a helpful tool to support your child through their healthcare journey: Check it out

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